Families with Children with Disabilities - Inequalities and the Social Model

This article suggests that families with children with disabilities experience a range of inequalities that families with children without disabilities do not suffer. It draws on a recent qualitative study to illustrate the way in which it is not just disabled people, but in the case of disabled children, whole families that suffer from unequal opportunities and outcomes. We draw on the social model of disability to show that the lives of these families are often characterised by financial hardship, stress and anxiety as a result of social barriers, prejudices and poorly conceived service provision. The social model of disability is usually drawn upon to illustrate the way in which social organisation disables people with impairments. In this instance, we illustrate the way in which social organisation disables not just the family member who has an impairment but the whole family unit. By applying this model of disability, new ways of creating practices and policies for these families can be developed which incorporate their views into the heart of the policy-making process.     

Disability facilitators' views of their work with children/youth with disability in South Africa

Children and youth including those with impaired body function or structure, in under resourced areas, can be disadvantaged in terms of education and health care, and can experience social hardship. Within South Africa, personal, health and education support to individual children and their families in under-resourced areas is provided by care workers from the National Association of Child Care Workers. This organisation also provides training and support to their care workers to take on the role of Disability Facilitator, to extend their services to children with impaired body function or structure. This study established the views of Disability Facilitators about their work. Fourteen participants (aged 25–54 years) were individually interviewed at their own worksite. Two themes were identified from the data - Empowerment and Burden of responsibility.The theme of ‘Empowerment’ encapsulated how participants viewed disability more widely than as it relates to impaired body function and structure. Disability Facilitators empowered children and their families in a holistic way, and advocated within their community to address negative perceptions about disability. They supported the wellbeing and participation of children with disability within their local communities, and perceived their work as motivating and worthwhile. However, the second theme ‘Burden of responsibility’ encapsulated the challenges in feeling solely responsible for disability support in their community and in providing care and support for children living in dysfunctional families. They recommended all care workers receive training about disability issues to reduce the burden of responsibility on themselves. This study has demonstrated the worth of Disability Facilitators to address the challenges inherent in disabling environments. This approach to service provision offers useful insights that could be adapted into other countries and contexts.     

A study of disabled children and child protection in Scotland — A hidden group?

This paper is based on analysis of data collected for a study, commissioned by the Scottish Government, which examined child protection work with disabled children. At a conceptual level, the paper draws on Goffman's frame analysis and on different models of disability. Focus groups were conducted with five Child Protection Committees (40 individuals) and semi-structured interviews with a further 21 practitioners from social work, education, health services, third sector organisations and the police. The findings show that, for various reasons, abuse of disabled children may go undetected. Where it is suspected, effective action does not always follow, for example, where practitioners over-empathise with parents. When child protection work is undertaken, disabled children may remain relatively invisible in terms of participation and professional focus. It is suggested that the ways in which practitioners and managers “frame” disabled children has implications for how abuse is responded to and how well these children are protected. Participants also “framed” disability in different ways, and it is suggested that a social relational model seems particularly applicable. In conclusion, in many respects disabled children experiencing abuse may remain absent from or to some extent hidden within child protection services in Scotland. While some creative work is taking place, considerable changes are required to make child protection services accessible to all disabled children, sensitive to their needs and respectful of their rights.     

‘Access and achievement or social exclusion?’ are the government's policies working for disabled children and their families?

The past decade has seen significant developments in policy and practice for disabled children and their families. In particular there is a new focus upon access and inclusion, with increasing awareness of the need to see disabled children and families as active partners within policy development and implementation. There is growing awareness of the implications of disability discrimination legislation across children's services and of the importance of improving arrangements for early identification and intervention to maximise disabled children's participation within mainstream services. The National Service Framework, the advent of Children's Trusts and a new Special Education Needs (SEN) Action Programme, together with the introduction of direct payments, give encouraging messages about multi‐agency working and a strategic and ‘joined up’ approach to childhood disability. However, many disabled children and their families continue to experience discrimination, poverty and social exclusion. The challenge for the Government is to ensure that disabled children are ‘mainstreamed’ across all policy initiatives and to recognise the talents and ambitions of disabled children and their families in service design and implementation. Copyright © 2003 John Wiley & Sons, Ltd.     

Living with dying and disabilism: death and disabled children

This paper explores the ‘offensive presence’ death has sometimes represented in disability studies. The paper focuses on interviews with three mothers of children with the label of life‐limiting and life‐threatening impairments and positions their experiences within the current policy context for disabled children in England. The narratives are part of a wider on‐going study funded by the Economic and Social Research Council ‘Does Every Child Matter, post‐Blair? The interconnections of disabled childhoods’ (RES‐062‐23‐1138). Findings include: (i) families experience social isolation and poverty; (ii) support from services is lacking and/or inappropriate; (iii) families worry about the future and the (physical, social and emotional) costs of care. The paper concludes by suggesting that social oppression theories of disability have much to offer in terms of challenging the disadvantage disabled children and their families’ experience during life and in death.     

A Joint University—Field Agency: Toward the Integration of Classroom and Practicum

Abstract

The authors describe an innovative program designed to create a joint university and local municipality agency in Israel. The agency was structured to be a teaching laboratory that would offer innovative services for social work clients and a unique field placement for students. Four major goals involved joint outcomes for both university and municipality. These included (a) demonstrating evaluation research as a means of accountability and as a tool for practice; (b) using generic social work methods for work with families; (c) reaching out to difficult and high-risk clients with innovative programs; and (d) using the laboratory as a training center for welfare workers, agency supervisors, and students from all levels of the social work programs. The authors describe and evaluate each of the goals, discussing the implications for teaching and for social work practice.     

Increasing Opportunities for Co-production and Personalisation Through Social Work Student Placements in Disabled People's Organisations

Social work student practice placements in disabled people's organisations offer several advantages for individual students, their peers and tutors, and DPOs themselves, who can offer placements for students in supporting service users to give their views as well as delivering social care services. In this context professional skills and anti-discriminatory practice are fostered through learning directly from disabled people as experts without the constraints of local authority policies.

This paper draws on my experiences of such student placements at Wiltshire and Swindon Users' Network over a 15-year period, 1993–2008, in collaboration with different universities. The social work student on placement here experiences an alternative organisational culture which recognises service users' expertise over professionals. The student learns to value collective peer support and working with activists who view their experience through the framework of the social model of disability. This facilitates a two-way exchange as the student learns about user-led practice and the disabled activists appreciate the skills the student brings.

The advent of policies of personalisation, the Big Society and the decreased role of local authorities is challenging the traditional model of adult care social work within local authorities. The placement of social workers in local centres for independent living, in order to provide intensive one-to-one support in support planning for those in complex situations, is only likely to increase in future. This can be seen as a positive alternative which enables professionals to rediscover their professional values and practice and extends the opportunity for placements beyond DPOs concerned with user involvement only.     

What rights for disabled children? Home enteral tube feeding in the community

The growing number of disabled children who are tube fed at home has important implications both for families and the professionals who support them. This paper reports on the preliminary findings of a project which aims to assess the practical, social and emotional impact of home enteral tube feeding (HETF) on the lives of disabled children and their families. The evidence presented here suggests that guidance and training on HETF for non-parent carers is both inadequate and inconsistent. Consequently access to education and social services may be restricted or even denied for disabled children on HETF as a direct result of their perceived need for nursing or medical care. Copyright © 1999 John Wiley & Sons, Ltd.     

An exploratory analysis of community-based disability workers’ potential to alleviate poverty and promote social inclusion of people with disabilities in three Southern African countries

This article draws on accounts by community-based disability workers (CDWs) of their life and work experiences in resource-limited rural communities in Botswana, Malawi and South Africa. Using the World Health Organisation’s community-based rehabilitation (CBR) matrix and the United Nations’ Millennium Development Goals as analytic frameworks, the article explores CDWs’ potential to contribute to improving the lives and increasing the levels of social, economic and political inclusion of people with disabilities, their families and communities. The article argues that CDWs’ knowledge, experience and understanding of disability in resource-limited communities may constitute an important local resource for helping to address the inter-related effects of poverty and disability in developing countries.     

Commonality and Difference in the Movement: an 'Association of Blind Asians' in Leeds

Qualitative research with a group of blind Asian people in Leeds indicated that issues of 'difference' were perceived as more important in mobilising disabled people at a local level than the issues of 'commonality' which characterise the international disability movement. Respondents identified more strongly with their experience of specific impairment and specific cultural identity than with their common experience of disablement. It is argued that such issues are common to other social movements and that the disability movement can learn much from the histories of Black people's movements and the women's movement. In building a successful movement at a local, national and international level, disability alliances will need to challenge racist stereotypes about Black disabled people and their families. They will need to support Black-led groups which organise separately while, at the same time, creating more enabling environments for Black people to participate more fully.     

Repositioning mothers: mothers,disabled children and disability studies

In this article we set out to review the ways in which mothers of disabled children have been portrayed within disability studies and the more broader academic literature. We argue that within disability studies mothers of disabled children occupy a liminal position because they are often not disabled and yet they can experience forms of disablism. Their experiences can differ markedly from the experiences of mothers of non‐disabled children and yet the consequences and outcomes of these experiences, such as developing a ‘special competence’ is largely overlooked. Mothers can work to effect change on behalf of their children and, in some cases, for disabled people more generally, however, this role of activist mother is largely undervalued. The review of literature presented here leads us to conclude that further research needs to be undertaken exploring and highlighting the ways in which mothers of disabled children negotiate, manage and approach their daily lives, operating within what are described by feminist scholars as oppressive mothering ideologies and disabling environments.     

Disabled citizens as researchers – Challenges and benefits of collaboration for effective action and change

ABSTRACT

This article reports on the evaluation of an initial pilot for a collaborative research project undertaken in an English county between a service user-led Coalition of Disabled People, the local authority and local university. The project sought to map the assets and resources for/of disabled people in their local community as well as needs and gaps, to inform the Coalition’s strategic planning and raise awareness of disability issues across the county.

The article discusses an inclusive, co-productive approach using participatory action research. It focuses on experiences from the pilot stage of the project and considers how the authors worked together with the required knowledge exchange and power-sharing to recruit and train researchers with expertise from their personal experience of disability. Recruitment ensured they had relevant qualities and skills that could be developed, to increase their confidence, knowledge and skills set as researchers. They then undertook photo-elicited, semi-structured interviews with other disabled people, analysed findings and created photographic exhibitions for dissemination and awareness raising.

Demonstrating a commitment to emancipatory research and collective action for change, the discussion considers the promotion of shared values within the research team, and explores the benefits and challenges encountered during the process and how the particular stages were managed to achieve the beneficial outcomes of the pilot. The article seeks to add to the literature of participatory/emancipatory action research for social work.     

Developing a community-based care system for seriously emotionally disabled children and youth

The needs of emotionally disabled children and their families are not optimally served within traditional mental health service delivery systems. Policies are inadequate, delivery systems are insufficient and underfunded, and supporting research is sparse. As communities begin addressing the needs of the seriously emotionally disabled child and family, planning should address community coordinated services. Such systems, however, are not easily established and maintained in communities accustomed to addressing children's needs in terms of existing fragmented categorical structures. National models exist but care and time are required to adapt critical elements from these models to local need. This article will review the rationale for integrated community-based, case management services for children and adolescents. A case example is offered illustrating issues affecting the development of one community support system.     

Preparation for Practice: Can Philosophy Have a Place in Helping Students Incorporate the Social Model of Disability Within Their Praxis?

This short paper emerges from an engagement with the paper by Morgan in this special edition which argues that the social model of disability can be viewed as a threshold concept which students struggle to ‘get’. I suggest that introducing social work students to philosophical concepts such as recognition at an early stage of their learning about skills, values and anti-oppressive practice, could facilitate the transition over this disability studies threshold, reducing the potential for ritualised performance instead of true understanding. It will be argued that Honneth's account of recognition in particular can be helpful in reducing the risk of psycho-emotional disablism within professional relationships between social work students and disabled service users. However, I also suggest that encouraging students to engage with philosophical questions about personhood and humanity are crucial to maintaining true anti-oppressive practice at a time of financial cutbacks in social work services.     

Children with disabilities in Swedish child welfare – a differentiating and disabling practice

ABSTRACT

Research shows that children with disabilities are victims of violence and abuse to a higher extent than other children and thus need support from social services. In Sweden, cooperation between two different social services units is required to support children with disabilities in socially vulnerable families. In this study, we have examined the intersection between children and disability in a Swedish social services context from the perspective of childhood studies and disability studies. The reasoning of the two units including the child perspective emerged during focus group interviews based on two vignettes. The results show two different rationalities, which has consequences for the disabled child. In spite of a social policy where the ‘best interests of the child’ are meant to prevail and disabilities are meant to be interpreted as barriers in society, children with disabilities seem to be reduced to individuals who are lacking in ability and competency and who are profoundly victimised by power structures that favour the adult perspective in social services.     

Child Sexual Abuse and the Black Disabled Child

This paper seeks to document a previously neglected area of study, namely the effects of sexual abuse on black disabled children. With a particular focus on black children with learning disabilities, it examines how the interlocking dimensions of race, gender and disability compound the problems that they are faced with in the aftermath of sexual abuse. This paper presents case studies drawn from data generated from a broader research project of sexual abuse and black families to illustrate the specific ways the negatively valued position of black disabled children shape responses to them. It is argued that the way in which black disabled children and their families interpret their experiences is likely to differ from other groups of disabled children, as multiple marginalised identities shape their lived realities. The paper concludes with some reflections on the implications for making risk assessment for black disabled children.     

Work and Work Alternatives for Disabled Young People

This paper presents results from a population based action research study in East Devon of the needs of 383 young people aged 16-25 years with a whole range of impairments and disabilities, and 152 able-bodied controls. A comparison between these two groups is made of their current and past experiences of work and work alternatives. The aspirations and expectations of the disabled young people are also compared with those of their families and service providers, and the preferred occupations of the young people, with various profiles of disability, are explored. Although the analysis pinpoints groups of disabled young people with particularly high levels of employment handicap, there is, throughout the study group, a need for progress out of static or unstable occupational paths. The handicapping features of employment services that impede this progress are discussed together with an examination of society's response to high levels of unemployment among disabled people. The research findings, set within this context, provide a basis for action research now being undertaken in local communities within East Devon to improve employment opportunities.     

Emancipatory engagement: An urban womanist social work pedagogy

ABSTRACT

Standing on the hope of the initial social work course from 1914 at Morgan College, this article provides insight into the significant learning outcomes of contemporary students in advanced social work practice with urban African American families. This research introduces the conceptual framework of urban womanist social work pedagogy as an inclusive practice-informed knowledge produced through the rituals, traditions, values, culture, and resilience of historically disenfranchised communities. Urban womanist social work teaching methods honor truth telling from the ones who have lived there. Urban womanist social work affirms transformative-centered research, teaching, and scholarship produced through institutions such as historically black colleges and universities (HBCU’s). The students’ reflective narratives reveal a process of transformation, centered in the freedom standpoint, which includes recognizing the location and context of their individual and collective identity as African Americans in the profession of social work. Urban womanist social work pedagogy cumulatively equips our students with intergenerational knowledge that inform their assessment of critical issues in Baltimore’s African American communities.     

Simulation Exercises in Disability Awareness Training: A Critique

This paper takes a critical look at simulation exercises. Little evidence exists that these exercises have a positive effect on either attitudes or behaviour but, despite this, they are used extensively in disability awareness training, both for children and adults. It is argued in this paper that by individualising and medicalising disability, and by focusing excessively on problems and difficulties, simulation exercises provide false and misleading information, and inculcate negative, rather than positive, attitudes towards disabled people. It is suggested that simulation exercises fail to simulate impairment correctly, and address neither the coping strategies and skills disabled people develop in living with impairment, nor the cumulative social and psychological effect of encountering social and physical barriers over a lifetime. Rather than using simulation as a means of attempting to understand the experience of disability, the paper concludes by advocating the use of disability equality training, which is devised and run by disabled people themselves.